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Thursday, October 18, 2018

In the past, I've tended to avoid collaborative projects. Or at least, I have since I've been sick. I worry about letting people down if I'm not able to complete tasks because of my health. I know that it's not entirely a rational worry, as in the past when I have worked on joint projects, I've tended to be the most reliable one in the group, but still the fear persists. That's probably also the reason why I'm self-employed rather than working for other people. When you're on your own, it doesn't matter if you don't complete a project - you just take a rest and start a new one when you're ready.But there's only so much you can do on your own, especially when it comes to creative projects. As a playwright in particular, there's a point where you're probably going to need a director and you're definitely going to need some actors - the world only needs so many one-woman shows.

At a certain point, you've got to start collaborating with other people to fill skill gaps, make bigger projects, and to challenge and expand your own abilities. The original problem remains, though. What happens if you get sick? Or in the case of chronic illness, run out of spoons? This year, I've been lucky enough to have been offered the opportunity to work on several cool projects - a theatre show called The Memory Plays, a short story anthology called Blood From a Stone: A twisted Villains Anthology, and a shared launch for my and another author's new children's books. My health has been reasonably good lately, though still pretty up and down. Through trial, error and sheer stubbornness, I've managed to make it work with balancing several projects and managing my health, but it hasn't always been easy. Along the way I learnt a few things, which I thought might be useful for others also wanting to work collaboratively.

1) One project at a time

Now, I didn't set out to work on several projects at once, it just kind of worked out that way. The thing is, projects have a way of growing and sometimes end up being a lot more work than you originally thought they would. Don't commit to a second (or third or fourth) project until you're certain of the scope of the one you're working on.

2) Share all information

Before starting working on The Memory Plays project, I wasn't very familiar with Google Docs. In fact, one of the other writers had to walk me through it with child-friendly level instructions. It has been a godsend for my anxiety levels though. One of the things I worried about going into the project was: what would happen if I got really unwell and ended up in hospital? Knowing the rest of the crew had access to the same information, documents and emails I did helped a lot, as even if I was too unwell to do any kind of hand over, they would know where to look to pick up the pieces of what I'd been working on.

3) No matter how busy, take time out if you're unwell

I've had some problems with my blood pressure lately, which, when it's bad, means my head feels like it's going to explode if I lift it and I pass out frequently. When I had bad episodes, at first I tried to drag my laptop into bed with me, to be able to keep working, but the work I did in this state was of pretty poor quality, and I ended up redoing it later. Going to sleep for a few hours or taking a day or two off meant I worked quicker and produced better quality work when I did get to it.

4) If people don't hear your needs, say them louder

I knew some of the people I've been working with at the start of these projects, but not terribly well. They knew I had an illness, but not really how it affected me. Because I look well, it sometimes made it difficult to get them to understand that there are some things I just can't do. For example, it took a while for them to realise that I couldn't meet in places that are poorly accessible, because on any given day I may not be able to walk up stairs. It feels awkward to keep saying "no" to meeting places, and I did start to worry they thought I was being difficult, but it's just not worth using up all your spoons on getting to places. If you keep saying no, eventually they'll get it and start to factor accessibility in automatically. It may feel uncomfortable, but the next disabled person they meet will thank you for it.

Overall, I'm really glad I've had the chance to work on these projects. I kind of wish they hadn't all fallen at the same time, as it's been pretty rough on the spoons, but even that has been a real confidence boost. No matter what my health is doing, I know now I can still contribute and be reliable in shared work. I'm also really proud of how the projects have turned out.

Friday, August 3, 2018

It's been a little while since I posted. At the beginning of July an assistance dog, Bindi, came to live with me.

If you've been following this blog for a while, you'll know my first match with an assistance dog didn't go all that smoothly, so I was a little nervous leading up to meeting Bindi. Fortunately things have gone really well, and we've bonded quickly. Bindi has been picking up my stick and other items for me, stablising me when my legs get shaky, and helping me get up off the floor when I have accidental lie downs. It's been a bit of an adjustment, as I've never before consistently gotten up as early as Bindi wakes me, but I think that routine has been really good for me. I'm outside more, as I take her to the park three or four times a day, and I'm getting way more exercise and social interaction with people I meet there.Of course, my original reason for applying for an assistance dog was to help with my sleep disorder stuff. That stuff is a little harder to train her for, but we've been working on a couple of things. To start with she mostly just ignored me when I did strange things in my sleep, but for the last week I've been getting her to follow me when I get up to go to the bathroom in the night, so hopefully she will also follow me if I sleep walk too. This won't necessarily wake me up immediately, but if I'm aware of her being there, nudging my leg, I think I'm more likely to wake up and orientate myself quicker, and less likely to do stupid things and injure myself. I've also been training her to turn on a tap lamp, and plan to give her the command when I wake up after shouting/screaming in my sleep. Hopefully she will learn to associate the two, and turn it on herself to wake me up.

This was on our first day of teaching her to turn on the light, and she was already doing so well.Overall, I've really been enjoying having Bindi with me. She's so well trained and behaved, thanks to the amazing team at Assistance Dogs New Zealand and so far the response to me having her in public has been really positive. People have mostly been good about not touching her when she has her working jacket on, though I have had a few problems with people crouching down and talking to her instead, which still distracts her - not so great if I'm leaning against her and she runs over to them!The thing that I've have found slightly strange is answering questions about why I have her. I didn't expect this to be an issue for me, as I've had years of answering questions about why I walk with a stick. Somehow this is different though. When people ask me about my stick, I can just say I have lupus. They may or may not know what that means, but they generally aren't too pushy about asking for more information. With Bindi, people tend to want more specific answers - what exactly is wrong with me? What is she trained for? How does she help? What type of dog is she? I have to admit, I tend to answer "Labrador" to that last one, even though I know that's not what they're asking.I do understand the curiosity, but I've found the questions difficult to answer on the spot. This could partly be because I'm really tired at the moment, as I'm still adjusting to the new routine, but I also find a bit of the "I'm a fraud" feeling slipping in. When I list the things she does for me, I start wondering if that's enough to justify me having her. They do make a difference to me - her picking up my dropped stick if I'm shaking can mean the difference between me getting home safely straight away, and me falling and spending an hour on the pavement waiting for my legs to start working again. But when I say it like that "She picks up my stick for me" it doesn't sound like much, especially as I'm not always walking with a stick when the question is asked. I've heard that's a feeling a lot of people with assistance dogs go through though, especially as medical conditions are often changeable so there will be times we are well, and don't rely on the dogs so much, and times we are unwell and really really need their help.I guess it's more of the invisible illness stuff. People often assume I am training Bindi, because I don't look "disabled". I've also had a lot of people assume I'm blind, especially if I'm wearing sunglasses, as that's the first association people make with service dogs. I'm not really bothered by the assumption, but it has led to some interesting situations as people start trying to guide me places - not always where I'm wanting to go, and sometimes by grabbing me quite roughly. This is well intentioned, but I'm fairly certain that no one likes being man-handled by strangers regardless of their level of vision. Unless the person is in immediate danger, I think speaking to them first or a gentle touch on the arm is really all that's appropriate or necessary! I've mostly just been calmly explaining that Bindi is an assistance dog, not a guide dog, in these situations but I did get a little short with the woman who grabbed me and pulled me into the side of the seat on the bus, leaving a bruise on my leg - definitely wouldn't have been helpful if I were blind either!All in all, there has been a lot of learning over the past few weeks - for Bindi, me and for the general public at times. I think that learning will continue for a while yet, as all of us keep figuring it out along the way.Thanks for reading,Little Miss Autoimmune.If you'd like to support the work Assistance Dogs New Zealand do, please consider donating through my givealittle page. Any amount - large or small - is incredibly gratefully received.

Tuesday, July 3, 2018

I was thinking today about how it feels when someone sees you as something that needs to be “fixed” when you’re a chronically ill person. I’ve tried to explain this before – usually falling back on saying “I don’t need to be fixed because I’m not broken” but I’ve come to realise that explanation isn’t going to work. Because they don’t believe you. In their eyes you are broken, and no amount of telling them you’re not is going to change that.So I started thinking about it differently. What if I am broken, but that’s not really the point?Imagine you own a cookie jar. It’s a beautiful cookie jar, a functional one too – so big and holds those cookies so well! And it can store other stuff as well – a multi-functional jar. Maybe sometimes you make punch in it, and serve it up at dinner parties, and everyone tells you how beautiful and wonderful it is.Then one day the cookie jar breaks. Smashes. Like irreparable - broken into a million tiny pieces, some of it is now ground into sand, smashed. You devote days – weeks – to trying to put it back together. You spend hours on the internet, and talking to repair specialists, but all of them say the same thing: “I’m sorry, but this is too broken to repair.” But you don’t believe them. You go it alone, trying glue after glue. You even try some alternative repair techniques – you origami the crap out of that jar, trying to make it hold together. But none of it works.You cry. You get angry. You spend days on the floor just lying in amongst the pieces.And then one day you accept it. Your jar is broken, and it isn’t coming back. So you pick up the pieces, and you start to make a mosaic.There are still days when you miss the jar, but as you work, you start to realise you are making something amazing. Some days you even look at the art you are creating, and you think it is more beautiful than the cookie jar was originally. You start to love it and become proud of it.Then someone comes to visit. They look at the mosaic. Their face falls. You broke your jar, they say.Suddenly the mosaic you worked so hard on doesn’t seem quite so beautiful anymore. Suddenly you feel embarrassed of this thing you have been building. It seems unimportant and useless, not like the cookie jar which could hold all the things.I know someone who’s jar got dirty, they say. They cleaned it and it was good as new.You should go to a repair specialist, they sayYou are just not trying hard enough. You could fix it if you wanted to. Think positive!I can fix it! It just a tiny crack.And you start to wonder if you were exaggerating. Maybe there was only one crack, and you could fix it! So you pull apart the mosaic you have spent so long building, and you are hopeful that this time you will fix it – you will have your cookie jar back! And you try, and try again to fix it. You go to the woman who washed her dirty jar, and she washes the pieces, but that doesn’t put them back together. You go to another repair specialist, but they tell you there is no hope. So you try harder, and you think positive, and you pray and hope, and try again and again… but still it is broken. You have to give up again.You have to grieve again.You have to start the process of acceptance and making something good out of the pieces right back from the beginning.This is what it feels like when someone wants to help fix or cure chronic illnesses. It feels like they don’t see all the good you bring into the world – all the beauty you have created around the hard parts… And maybe that is not how they feel. Maybe they do think the mosaic is beautiful, they are just convinced the cookie jar is better and are sad for you that you don't have it anymore. But that is not for them to decide, and it’s pointless and kind of hurtful to keep bringing it up when the cookie jar is gone.I know that people are trying to help when they suggest fixes for my illnesses, and I do appreciate that they are wanting to make things easier for me. But there is a big difference between “This will fix you” and “I wonder if this might help?” and also a big difference between suggesting something and insisting that someone must try it. I don’t mind when people make suggestions – some of them I am really thankful for – but I do need people to do it in a way that respects the life I have now.I am done searching for that cookie jar. I love the mosaic my life has become, and I’m not looking to go back. But if you can suggest a gloss that will make my pieces a bit shinier… then by all means tell me about it. I'm all for shiny pieces.Thanks for reading,Little Miss Autoimmune

Monday, June 18, 2018

The other night I found myself watching a video about a bar
which has started using straws made out of pasta as a biodegradable alternative
to plastic straws. Now, obviously I’m a coeliac, so this isn’t something I
would personally ever want, and I could see a few other flaws with the idea. But
overall, I thought it was cool that the bar was thinking about the problem, and
approaching it with creativity and innovation.

And then I read the comments.

Man, this has to have been one of the most bizarrely
passionate comments sections I have ever read. People were mad about food wastage,
people were mad that we don’t just drink straight out of the glass, people were
mad at hipsters… the anger just went on and on. But the comments that surprised
me were the many many able bodied and normal-eating people getting mad on
behalf of coeliac and disabled people.

So, the coeliac part of this is kind of obvious. If you order
a drink, you don’t expect for it to arrive with a lump of glutenous pasta in it,
and in all honesty if I drank out of a straw assuming it was a normal one, and
then later found out it was made of gluten, I would be pretty annoyed. But that
scenario is quite unlikely. While there obviously is a noble environmental
motivation behind this, the pasta straws are clearly also (at least in part) an
advertising gimmick for this bar. They’re not keeping the fact that their
straws are made of pasta a secret – they’re proclaiming it loudly for all to
hear. It may become an issue down the track, when the novelty wears off, but
any problems would be mitigated by a simple note on the menu saying that the
straws contain gluten and to let staff know if you have an allergy.

The disability part of this is a bit more complicated. For
some people with disabilities, differences in strength, function or movement
can mean that straws are an essential part of daily living. People facing these
issues may not be able drink safely or independently without them. In this
case, straws usually do need to be plastic, as the size and malleability are
important, and therefore metal or pasta straws aren’t always a suitable
replacement. Straws are also often used in rest homes and hospitals for similar
reasons, and again alternatives other than plastic probably wouldn’t be
appropriate.

When I saw comments along these lines, and realised the
majority of them were coming from able-bodied people, at first I felt
pleasantly surprised. It was nice to see able-bodied people thinking outside of
their own experience and considering what impact a simple change might have on
people with disabilities. But as I read on, and the anger and vitriol in the
comments rose, I started to feel a bit odd about it.

While it is nice to see able-bodied people going out of their
way to advocate for people with coeliac and/or disabilities, I feel like this
is kind of a weird one for people to be getting so passionate about. The gluten
stuff is a potential danger, but it wouldn’t be that hard to remedy with clear labelling
and a few simple kitchen protocols to avoid cross-contamination. With the
disability stuff, the times I’ve eaten in a café or restaurant with someone who
needed a straw to be able to drink, that straw came from the person’s bag not
from the restaurant itself. This isn’t my experience, so I can’t say this for sure,
but my guess would be that it’s pretty common for people who need straws to carry
their own, as they couldn’t be sure of always being able to get one from a
bar/restaurant. While people needing access to plastic straws is an issue, I’m
just not sure bars not supplying them is as big of an issue as some were making
out.

The thing that bothered me the most about this though, is I
don’t often see this level of passion from able-bodied people over other disability
or illness issues. There have been so many times when I or someone else has
pointed out that something is not accessible, and the response has been “Oh…
that’s a shame,” and a swift change of subject. Worse, online the response is
often defensive, angry or filled with nasty personal attacks, instead of doing
anything to try to understand or mitigate the problem.

Where is the passion and support for those things, which (in
my opinion) cause a much bigger barrier to disabled people participating in
life? I know, we all have our own lives, our own causes and we simply can’t get
involved in fighting for everything. But I do have to ask myself why, when
people are finally getting passionately involved, is it over plastic straws?

Now I don’t want the take away from this to be “stop caring
about plastic straws.” This is a real issue – both from an environmental
perspective, and from the point of view of making sure people who need straw still
have access to them. But if you care about plastic straws for people with disabilities,
maybe just try to use some of that passion towards other disabilities issues
too.

Sunday, April 15, 2018

Along with being a blogger, I'm also a young adult author. One of the cool things about this is that I get to connect with other authors from around the world. Like any career, writing can be tricky when you're living with chronic illness, but it is more forgiving than many other jobs, and it certainly provides other benefits and ways to cope with the harder parts of illness. Someone who understands this is my fellow author Megan O'Russell. Like me, Megan is living with lupus and writing young adult novels (her writing is brilliant by the way - highly recommend How I Magically Messed Up My Life in Four Friggin' Days.) Unlike me, she's also juggling a career as a musical theatre performer and living in a tour bus!Megan's been kind enough today to take time out of her busy schedule, promoting her new bookBoy of Bloodto tell us a bit about her fascinating life and about her lupus story.

A Little Bit of Lupus by Megan O'Russell

I was diagnosed with Lupus after one freak day when I was twenty-three. It had been snowing during the night, and I was too nervous to pull off the highway to get gas on the way to work.

Fast forward to the end of the day. I was stuck in a parking lot with a dead car battery, no gas, and really terrible frostbite, even though the temperature had jumped up to 50 Fahrenheit (10 Celsius).

My husband insisted that I go to the doctor and have my gray fingers looked at. Luckily for me, the doctor at the urgent care took the time to ask how I had gotten frostbite and was diligent enough to realize something wasn’t right. About a week later, I was seeing my first Rheumatologist with a diagnosis of S.L.E.

That was… we’ll just say a while ago.

And here’s the thing. For someone who’s been living with autoimmune for a while, I’m really pretty healthy. I make my living singing and dancing on stage as a musical theatre performer. I’m also an author with three different series at two different publishers.

Right now, I’m on a national tour of a show where I spend much of my allotted sleep time curled up on the floor of a bus. Sleeping under my bus seat isn’t as bad as it sounds, but still, not something that you picture someone with a chronic illness pulling off.

Whenever I tell someone I have Lupus, either in casual conversation, or because I need them to know, I feel like an imposter. If I can dance on stage, I’m not really sick right? If you can hike a mountain, do I actually need to go see a doctor?

It comes from all sides. I had a lab tech laugh at me because he didn’t know why he needed to do a chest scan on someone who’s still sweaty from doing a 5K (I’d say running, but my lungs were in bad shape and I’m not great at self cooling, so it was like a 2.5k run/2.5k shamble along).

My husband almost stopped talking to some of our friends because they could not understand why I could possibly need to sleep between shows. They thought I was just being lazy and territorial in my wanting to nap in my room. Nope. I have to sleep to stay off steroids.

Trying to explain to each new team I work with on a show that, yes, I have Lupus. No, you won’t ever notice on stage. The spilt between treating me like a hypochondriac and an egg shell are about 50/30 (20% are really awesome).

I was at the doctor not too long ago because I wasn’t breathing very well. Her response: “How are you dancing if you can’t breathe?” I see lots of spots and try not to fall over, that’s how.

The other actors do crazy workouts before the show. I have to save my energy for the stage.

Some of the people we travel with only manage to sneak in a few hours of sleep a night. I’m not trying to compete with how little sleep they’re able to get when I say I’m just plain old exhausted. Not from lack of sleep, just from existing with an auto-immune disease.

And… I still feel like an imposter because I’m not that sick. Even at my worst, I’m still surviving.

Maybe that’s why I’ve turned so whole-heartedly to writing. A profession where it doesn’t matter if your lungs are acting funky, and no one cares if I look a little dead behind the eyes.

In acting, the first thing I do in my workday is go into a dressing room and strip down with my coworkers. There’s nowhere to hide the dent in my legs from the steroid injections.

I am completely safe and competent while writing. I can create a world where monsters reign and magic is a constant battle while icing my knees. The magic of first love can be created while my whole torso (at least it feels like my whole torso) is covered in Vicks.

Acting and writing are both forms of storytelling, but when living with auto-immune, they are the exact opposites.

My word count doesn’t give me a five minute warning that I’m about to start a two hour creative sprint that will stop for nothing short of the theatre catching fire.

If my brain can’t sort through how to finish a scene, I click save and shut the computer. And you know what? My characters can’t complain. Why? Because I shut the computer, so ha!

In writing, I’m in charge. I get to say how much or how little I’ll do on any given day. I have the power to take a step back for a moment, and no one will take the story from me because it’s mine.

I’m not an imposter. I’m an author. And the author writes the rules… literally.

And there’s something in spending more time as an author, in finding a venue outside the stage lights where I’m useful and competent, that’s made it much simpler for me to say no in other aspects of life as well.

No, you’re wrong. Just because I don’t look sick doesn’t mean I’m fine and just need a cup of coffee.

No, I don’t have to go to the gym everyday before the show just to keep up appearances. I’d rather not have fire shooting through all my joints, thank you very much.

Page or stage, I am living and thriving with Lupus. And it doesn’t really matter who can’t believe I’m ill.

I am more than just my messed up little body. I am a useful, competent, worthy human, and I am not an imposter. Lupus is one small part of my enormous and overwhelming life. My story is my own.

Thursday, January 18, 2018

I’ve been having the same conversation with several wonderful people in my life lately. And, if I’m honest, I’ve been having the same conversation with myself too. It can basically be summed up like this: Just because you have anxiety, it doesn’t mean things aren’t actually scary.Just because you have anxiety, it doesn’t mean life isn’t really hard sometimes.Just because you have anxiety, it doesn’t mean people aren’t behaving in an absolutely sh*tty way towards you.When you live with anxiety, you get used to pushing down your feelings. Your mind and body spend a lot of time making you feel like you are in serious danger, but logically you know you’re not, so you have to push those feelings away in order to be able to function. Anxiety also spends a lot of time making tasks feel ten times harder than they should, magnifying criticisms, and twisting words and situations until you feel worthless and like everyone hates you. So we spend a lot of time not trusting our own perceptions – repeatedly telling ourselves that we are not trustworthy.The thing is though, sometimes we are right.At the end of last year, I was lucky enough to be able to travel overseas to England and Germany. Considering I live literally on the other side of the world, I knew that some of this was going to be a real challenge for my health – both physical and mental. Even more so because in the weeks before I left, I had been under some extreme stress and as a result had a really serious sleep walking incident injuring my head and neck.Fortunately, my physical health held up surprisingly well while I was overseas. There were a couple of points where I really, really needed the wheelchair assistance at the airports, as I couldn’t hold my own weight after sitting for 12 hour flights, and one day in London where I had pretty bad vertigo and nausea. But otherwise I kept it together physically, and my anxiety was staying in check too. Until I got to Germany.My arrival in Germany was not at all straight forward. My aunt was kind enough to drive me the two hours from where I’d been visiting her in Bristol, back up to London, then I needed to catch two flights and two trains to reach the city where my friend lives. I was nervous about the journey, given that I have the direction sense of a carrot and quite often get lost in my own city, let alone halfway across the world where my grasp on the language is pretty limited. But I psyched myself up, researched and wrote down the train times, and started the journey.

And then the flight was delayed.And then the second plane was late.And then by the time I arrived, the train I was supposed to catch was no longer running, and the only other option was a much longer journey.And then I realised that there were only two people around, neither of whom spoke any English, and I was completely blanking on any German other than “Entschuldigung, sprechen Sie English?” (Excuse me, do you speak English?) and “Kannen Sie mir hilfen bitte?” (can you help me please?) which does not help when the answer is invariably “nein” and you do not have the language skills to understand the help they are trying to give you anyway.And then, after managing to communicate that I needed to get a train to Jena (ein Zug nach Jena), the information I was given did not match up with the information displayed on the train platform.And the ticket machine did not have an English option that I could find, and it timed out three times as I tried to figure out how to make it work. Nor would it accept my money or my card, and the fines for getting on the train without a ticket are high.And when I got hold of my friend to ask for help, she couldn’t translate the information either.And then my phone died.And then there was no one around, let alone anyone I spoke the same language as.And then I was completely alone on a train platform in Germany,in the middle of the night, in the snow, with no idea whether I was even in the right place.So naturally, at this point I was panicking. By now it was after midnight, I was jetlagged, I’d been traveling for about 14 hours, and I was fricken exhausted. My legs were spasming, threatening to give out, but I knew if I fell I probably wouldn’t be able to get up again. Given the snow, being stuck on the ground overnight would likely mean hypothermia… and possibly losing some toes.To cut a long story short, I saw there was only one train left on the board, so finally managed to persuade the ticket machine to take my money and got on it. At the next stop, I discovered the information I’d been given about the second train was completely wrong, but I did at least find some people who spoke English. They didn’t know where I needed to go, but they could at least point me in a likely direction. I then spent far too long standing in an elevator which said “doors are opening… doors are closing… doors are opening… doors are closing…” repeatedly but wouldn’t go anywhere or let me get out, before finally dragging myself and my suitcase up a couple of staircases while a group of men laughed at me from the top. I found the right train, got on it, and my friend met me at the other end.Okay, so aside from the fact that a lot of this is now funny in its ridiculousness with some distance, why I am telling you all this, and what does it have to do with anxiety? I look at this story now, and I am incredibly proud of myself for keeping it together and figuring out what to do to get myself safely across Germany. At the time though, I was furious at myself for panicking. I was convinced I was making a big deal out of nothing, and that anyone else – anyone who didn’t have health problems or anxiety – would have been absolutely fine. Heck, I was even blaming myself for the whole situation – surely I was somehow to blame for the planes arriving late, the ticket machine being faulty and for the train timetables at the airport being out of date. It was clearly All. My. Fault.Except it wasn’t.None of this was in my control, and in fact, I handled it a lot better than most people would have. Right from the first delayed flight, I was coming up with back up plans for what I would do if I couldn’t catch the flights and trains I’d planned to, and when those back up plans got thwarted, I kept coming up with new solutions until I found something that worked.It really wasn’t until I told the story to other people, and they responded with a horrified look, or said they would have sat down and cried if it had been them, that I realised this was actually a really stressful situation, not just an overreaction from me. This is pretty much the conversation I keep having with my friends. I find myself saying to them:Yes, you have anxiety, but no, you are not overreacting, your partner/boss/flatmate/family member/friend is actually being unreasonable. No, you are not weak and useless, life has just thrown you so many curve balls you’ve forgotten what straight looks like, and actually you are stronger than everyone else to have dealt with all of them. No, you are not stupid, your work/study/technological item is just really, really hard to get your head around sometimes.You see the thing people sometimes forget is that it’s entirely possible to both have anxiety and be upset because of a genuinely yuck situation – the two do not negate each other. Each friend who has come to me, I’ve reminded them of this, and they’ve done the same for me when I’ve started to doubt. Of course, there are going to be times where it is my anxiety or an overreaction, but I honestly think deep down I do know the difference, I’ve just stopped listening to myself. I don’t know what the solution is here. Finding the balance between pushing anxiety away, and listing to the real and valid fears is hard, and it’s something I (and my friends) will probably have to keep working on for a while. In the meantime, when my friends come to me with situations like this, I’ll remind them of one important thing:You are worth trustingAnd I’ll remind myself of the same thing.Thanks for reading, Little Miss Autoimmune

Tuesday, November 21, 2017

Last week, I had one of the worst sleep-walking incidents of
my life. I’d had some distressing situations going on, and as often happens
during times of stress this led to my sleep disorder worsening. I sleep
ran/fell full-speed, head-first into my cupboard door. As you’ll see from the
photos below, this caused some damage to both my head and the door, and I also
injured my back and neck in the process. I spent the rest of the night in
hospital, lying perfectly still, while doctors assessed whether my neck was
broken. I get very anxious about my neck being touched, so having to let
strangers put their hands around my throat, and at times restrain me to stop my
head moving was probably one of the most stressful parts of all this for me. It
turned out to be a complicated task as my X-rays don't look normal for someone
my age due to the damage to my spine from my arthritis, and so making a
clear-cut ruling as to whether or not my neck was broken was difficult to say
the least.

My head has now healed up, bar some scarring, but in the
nights since, I've continued to have sleep disturbances, waking with
frightening dreams and repeatedly getting up to interact with them, often
re-injuring myself. I’ve now got a motion sensor night-light which wakes me up
if I get outside my bedroom, but the sleep disruptions are still exhausting,
and it turns out there are still several ways for me to sleep-injure myself
without leaving my room (sorry knees!)

Most of the time, I don't think living with illness is a big
deal. This is one of the times where I'm reminded it kind of is. My neck has
been cleared, but this very easily could have gone the other way, given the
force with which I hit the door and the fact that my bones are already weakened
by my illnesses and medications. Even though I tried very hard to comply with
the medical staff's instructions to keep completely still, the stress and sleep
deprivation caused my muscles to start spasming and the nurses had to restrain
me to try and protect my spine. If my neck had been broken, this could have
caused serious damage. As much as I want to stay positive, find the funny side,
and calmly move on from this experience, I can't help but feel a little scared
when I think about that.

I’ve realised though, that right now, it is okay for me not
to be okay. Being scared is a normal reaction to an abnormal situation. In
fact, I think it would be far more worrying if I was completely fine right now,
as that would be a sure sign that something was very wrong! I’m handling this a
lot better than most people would, as I’ve had plenty of full-on health
situations, and have built up a fair bit of resilience. But I’m still not okay.
And that’s okay.

I’ve been getting a lot of questions lately from friends as
to why I’m not on sleep-medication, whether various alternative therapies would
help, or whether I should be in some way restrained at night. Of course, after
this, I have myself been questioning my decision not to seek further treatment
for my sleep disorder. While I have hurt myself before while sleep-walking,
this is the first time that I’ve faced the prospect of ending up with a
long-term injury caused by my sleep disorder. I even started feeling guilty
about my decision, and wondered if I brought this accident on myself by
choosing not to continue searching for answers.

But this guilt comes from an illogical place. My doctor
fully agrees with my decision not to continue looking for treatment, and she
confirmed that there are no more medical options left anyway. When it comes to
non-medical therapies, I have fought the sleep disorder with everything I have.
To clarify things for myself, I wrote down a list of everything I have tried to
help improve my sleep disorder. It was four and a half pages long, and I’m sure
I was forgetting some things. I’m not going to include the full list here, but
here are a few examples:

·Sleeping tablets

·Different sleeping tablets

·Medication specifically designed for sleep
walking

·Sleep restriction therapy

·Treating thyroid, iron, vitamin D and vitamin
B12 deficiencies

·melatonin

·Meditation/mindfulness (various types)

·Relaxation (various types)

·Cognitive behavioural therapy

·Homeopathic sleep drops

·Lavender sleep balm

·Weird alternative therapy I can’t remember the
name of which involved holding metal rods and balls

·Treatment for heavy metal poisoning (including
removal of fillings)

·Keeping a strict bedtime and wake up time

·Only going to be when tired and not setting an
alarm

·Warm milk

·Counting out of sequence

·Sleeping naked

·Sleeping under a weighted blanket

·Hypnosis (both in sessions with a therapist, and
self-hypnosis using a guided audio.)

Most of the things I’ve tried made no difference to my
sleep-problems, while others made it worse, or had dangerous side effects. The
only thing that made a significant difference, was having an assistance dogstay with me, but it’s going to be while before I can have a dog permanently.

As you can see, the list ranges from medical interventions, to psychological interventions, to alternative therapies, to straight out
old-wives’ tales. Some of the things on the list even contradict each other, as
in cases where I’ve been given conflicting advice, I’ve tried to give each
option a shot. I can confidently say I have tried it all.

Even if I hadn’t tried everything, this disorder is still
something outside my control and I don’t need to feel guilty for it anymore
than someone with cancer should feel guilty for the effect the disease has on
their body.

I understand my family and friends’ worry, and I appreciate
their concern and care for me. Continuing to battle against the sleep disorder
in these ways isn’t going to help right now though. Earlier this year, I ended
up feeling very bad about myself for having anxiety, and spent a lot of time
and energy on wanting to get rid of it. All that did was cause it to escalate.
As soon as I came back to accepting my anxiety as just something that is a part
of my life, it drastically reduced to a much more manageable level. I feel like
the same applies here. I am going to sleep walk more at the moment, as stress
and sleep-deprivation make it worse. That sucks, and it’s unpleasant to keep
injuring myself, but getting upset about it and coming up with new (and bizarre)
ways to try and stop it is just going to cause more stress and make it worse.

With any luck, it won’t be too long until I’m assigned an assistance
dog and in the meantime, I’m taking a deep breath and trying to accept the
sleep adventures.

Monday, September 4, 2017

Last year, after things went so badly wrong with treatments for my sleep disorder, I decided not to seek further treatment. In part, this was because there weren’t a vast number of further options left to try, but it was also about the effect the previous treatments had had on me. Some had made no difference, but the emotional roller coaster of hoping they would then being disappointed when they didn’t was detrimental to my wellbeing. More often than not though, treatments had instead increased my sleep problems, and left me in a worse state than when I started. I decided that accepting the sleep disorder as a part of my life was preferable.This was not a decision I made lightly. I had to spend a lot of time soul searching to figure out whether I was simply avoiding other treatments out of fear, or whether not seeking further treatment and accepting the disordered sleep was a valid option. In the end, I came to the conclusion that acceptance was the right path for me. This has been hard for some people to understand. I’ve had many people suggest a range of alternative therapies, or insist that I should go back to the sleep specialist or seek a second opinion. I’ll admit, my responses to these suggestions have not always been polite, and I do at times get defensive in these conversations. Accepting my sleep disorder doesn’t mean that I want to have it, or that I have given up. It just means that I no longer put any energy into resenting or trying to change the fact that I do have it. When it comes down to it, I don’t really believe the sleep disorder is going anywhere, no matter what I try. I can continue to put all my energy into fighting it, or I can choose to live the best life I can with it.Accepting something negative as a part of your life is not always easy, and there are times, particularly if I’m having a run of bad nights, where it can be nearly impossible. But ultimately, I believe this is the best thing for me.There is of course still the problem of the more dangerous aspects of my sleep wandering. My sleep specialist advised that I would need to make my environment as safe as possible. My floors need to be kept clear, to reduce the risk of tripping, and I keep all internal doors open so that I don’t run into them when I’m trying to escape scary dreams. Unfortunately, there’s only so much I can do, and I do still at times injure myself or wake up to find myself in potentially dangerous situations.Just after things got really bad with my sleep stuff, a friend suggested getting an assistance dog to wake me if I started sleep wandering. I wasn’t 100% sure how or if it would work, but it seemed like something that could potentially help, so I applied. The waiting list for dogs was several years long though, so I didn’t expect anything to come of it for a while.Earlier this year, I was contacted by Assistance Dogs New Zealand, saying that even though I was still quite far down the waiting list, they had a dog who they thought may fit my situation well. They began the process of training him for me.To cut a long story short, this particularly dog did not work out for me. He had very high energy, and was quite strong, which was difficult for me to manage as I’m unsteady on my feet and don’t have great hand strength, so couldn’t grip his lead very well. This is of course one of the difficult things about having multiple conditions, as sometimes the things that help one make another worse. The fact that my conditions are so changeable also didn’t help, as I was having a particularly good day when I was first interviewed by Assistance Dogs New Zealand, and so they matched me to a dog based on that. But I would also need to be able to care for the dog at my worst, and after seeing me on a bad day, Assistance Dogs NZ decided that this was not the right placement for this particular dog, and I had to agree.The good thing was that I had a trial with another dog, before he went to his permanent placement. He was a lot calmer, and found this very helpful for my sleep problems. While it didn’t stop me having sleep disturbances, I found that I didn’t react as strongly to them. While I was still very scared of the things I was seeing, I could tell from the fact that the dog wasn’t reacting to them, that they must just be dreams. This meant I felt less of an impulse to get up and run away, which reduced the risk of me hurting myself. Funnily enough, this has never worked with having a person in the house, as I tend to just incorporate them into my dreams, or even blame them for the strange things I’m seeing!So, I am back on the list to be matched with another dog, though it will be a couple of years before that happens. In the meantime, I am fundraising for Assistance Dogs New Zealand, as raising $20,000 to go towards training future dogs is a requirement of receiving a dog.This has been an interesting time for me. Of course I got attached to both the dogs who came and stayed with me, and was very sad to see them go, but it was very useful to have this experience before I receive my own dog in a couple of years’ time. I still believe that not fighting against or resenting my sleep disorders – or any or my illnesses for that matter – is the best thing for me. I can live a great life with or without health problems. Having an assistance dog is just a way for me to manage my illnesses, and live my best life, sleep disorder or not.If you’re interested in Assistance Dogs New Zealand, and the work they do, you can find more information on the Assistance Dogs New Zealand website. If you would like to, you can also donate to my fundraiser for them on my Givealittle page. All donations, big or small, are very gratefully received 😊Thanks for readingLittle Miss Autoimmune

Tuesday, July 18, 2017

The last few months, I haven’t been doing so well mentally. My anxiety has been through the roof, and looking back at some of my thought patterns, I think I’ve also been struggling with depression. These are not exactly new things to me – I’ve lived with anxiety and depression since I was a teenager – but I’m usually more aware of what’s going on and can therefore manage it. This time it seemed to be escalating dramatically for no reason. But when I look at it properly, with a bit of perspective, this didn’t come out of nowhere. I’ve been really busy this year, what with taking on multiple new students, studying, and publishing my first novel. The stress of having to so much to do, so much to learn, and having to keep multiple to-do lists at the front of my mind, started to get to me, and I felt like I was haemorrhaging spoons most of the time. My last post was about trying to get better at remembering to count spoons, and so I tried to cut out anything unnecessary, in order to save energy.This should have worked. Reducing what I was doing should have left me with more spoons, and feeling more able to manage things. Instead I think it had the opposite effect. I felt more stressed, more anxious, and slipped deeper into negative feelings and fatigue. As this has gotten worse, my self-esteem has been plummeting. I found myself struggling to leave the house, having panic attacks at the thought of having to catch a bus, and reducing the number of people I talked to until I could count them on less than one hand. I also started to find holding conversations hard, as I’d done very little except sit at a computer screen doing admin all day, and felt like I had nothing interesting to talk about. This isn’t me. Despite all of my illnesses and challenges, I am usually someone who lives widely. I’m someone who’s pretty comfortable going off by myself to events, talking to strangers, and have a pretty amazing group of wonderful friends. I enjoy trying new things, and have done many things which others find far too scary.So what was happening here? Why was reducing what I was doing increasing, rather than alleviating, my anxiety? I’ve come to realise that not all spoons are created equal. Most of what I cut out was the fun, social stuff. I lean towards being a bit introverted, needing time to recharge after doing things involving other people, and so these do tend to take more spoons for me. This seemed like the obvious stuff to cut out, but I hadn’t taken into account what these things give me. Going out with friends, meeting new people, or going to events brings a lot of positivity and inspiration into my life, which offsets the tiredness that comes with it. It probably also didn’t help that I was working and studying by myself from home, which meant I wasn’t even going outside for days at a time. I think if I had just been outside walking to work every day, or in an office with colleagues, it probably would have offset at least some of what I was feeling.It hasn’t all been bad. Publishing my novel has been an incredible experience, and I’m very lucky to have had the work and study opportunities I’ve had this year. I also have some amazing people in my life, who have been there through this period. Looking back, I can see I have been disconnecting though. My emotional state had been making it hard to be present in any situation, as I get stuck in anxiety loops in my own head. When it comes down to it, this isn’t something other people can fix, but spending time with people rather than isolating myself is going to be a big part of getting myself back on track. It’s also important for me to be doing things other than work. For the moment, that’s taking the form of going to talks, shows and other interesting events. I remember writing a few years ago about another period where I had been isolating myself after some stress, and how much it helped going to events where you don’t really have to talk to people, just go and listen. I’m hoping this will also be the case again, and with time all forms of socialising will get easier too.Looking back at my old blog posts, I feel like I’ve been getting myself into bad situations with my health and mental health again and again over the last few years. Last night I couldn’t help but think of the saying “A lesson will repeat itself until it is learned.” I felt a bit defeatist, knowing I keep putting myself into the same bad places, and seemingly not learning my lesson. But today as I’m writing this, and looking back at my old posts, I know that each time things have gotten out of control with my health or mental health, I have learned a little more. I have taken a little more responsibility for my own part in it, and I have got myself back on track a little quicker each time. Perhaps my learning still isn’t done yet. It may be that I do need to encounter this lesson again, before I fully understand it, or perhaps I am done, and have finally learned what I need to. Either way, I can at least learn this part of it – to stop isolating myself and realise that fun and adventure are just as important to my wellbeing as rest and saving spoons – and I can keep making changes for the positive.Thanks for reading,Little Miss Autoimmune

Sunday, May 7, 2017

I’ve been having a lot of trouble counting spoons lately. Usually when I start to have problems with this it’s because I’m feeling really awful, and scraping together enough spoons to do even the simplest tasks is hard. This time, it’s kind of the opposite problem. I’ve been really well lately, and when I feel good, I tend to forget I still have restrictions on what I can do.

Sometimes this isn’t such a bad thing. It’s okay to test the limits a bit – do a bit more, and if it turns out it’s too much, scale things back. But something in me seems to have lost the plot a bit at the moment, and I’ve been booking in things that would be hard even for a healthy person to do, as if I think I’ve become superwoman. I find myself thinking “It’ll be fine! I have way more spoons now!” No. No, actually I have some more spoons now. Not enough to do everything and certainly not enough to do 15 hour days (what was I thinking!)

Fortunately every time I’ve overbooked myself recently I’ve realised it’s not going to work, and managed to reschedule things without letting anyone down, but it’s caused a fair bit of anxiety for me in the meantime. As with most anxiety, there were many factors involved, including that I was late on getting my B12 shot this month, but at the point where I had to simply walk out on something because I knew I was about to have a panic attack, I realised I had to get things better under control. So, I’m learning my lesson and getting better at carefully planning what I take on so I don’t keep putting myself in that position. It’s made me wonder, though, what’s brought on this sudden inability to spoon-count for me. Part of it is that’s there’s always an adjustment period to having more or less energy, as you figure out exactly what you can and can’t do now, but I feel like there’s more going on here.

Well, the obvious thing is that there are lots of things I want and need to do at the moment. I’ve been given lots of awesome opportunities lately, and I’m loathe to turn them down, but that does of course have to be balanced against the commitments and responsibilites I already have. Sometimes making those decisions can be really hard. Saying “no” can mean letting someone else down, missing out on something you really want to do, or both.

The other thing that’s been playing on my mind a lot lately is a feeling of being a “fraud”. When I’m feeling well, it seems less valid to say no to things because of my health. I’ve had times recently where I’ve said no to something then thought “Wait, could I have done that? Is it true that I’m not well enough? Am I actually even still sick?” After getting my blood test results back a few days ago, I can say yes, I am definitely still sick (nothing to worry about – just quite clearly showed a flare) but there’s a niggly part of my brain that makes me start to doubt myself.

I know very well that if this was a friend rather than me, I’d be reminding them that invisible illnesses aren’t always consistent and just because you can do something one day doesn’t mean you can do it the next. None of that means it’s not real. I also need to remind myself that part of the reason I’ve been well lately is because I’d been doing a good job of taking care of myself. If I start taking on too much, and let the healthy eating slip (guilty) don’t exercise enough (also guilty) and forget to take my meds on time (yep, done that a few times too lately) I’m not going to stay well. I also need to remember that I’m not a fricken super hero. If it would be a lot for a healthy person to do, then there’s no reason for me, a non-healthy person, to feel guilty that I can’t.

So, I’m going to do better at counting spoons, and try giving myself a break and stop accusing myself of being a fraud. I’m also going to forgive myself when I fail at times, take on too much, and have to spend a day curled up on the couch because I’m too tired to do anything else. Sometimes that too is just a part of this process and gettting mad at myself is quite frankly a waste of spoons.